A “Wisdom For My Younger Self” Living Room Stories Talk by Betsy Fenik
Here are 7 things I’d tell my younger self:
- Believe in yourself
- Keep going no matter what
- Embrace uncertainty
- Learn that it’s ok to be uncomfortable
- Fear is good
- Connections are what matter
- listen to Glinda
This is the story of how I came to believe these things and more importantly what came after.
In 2004, after a brief, but serious illness I had the worst day of my life. I was diagnosed with MDS, an often-fatal pre-leukemia disorder of the bone marrow. Knowing that I could very well die from this I was instantly overwhelmed with regrets. I had wasted so much time living in fear and being stuck.
- stuck in a job that I didn’t really like
- stuck over what I really wanted to do or be, never having had the confidence or courage to do it.
- stuck in a battle with my body, hating it, mistreating it with food and cigarettes.
I was paralyzed in my life, unhappy, unhealthy and afraid then while being treated for MDS, a medication caused my spleen to rupture and the operation to remove it almost killed me. I was put into a medically induced coma in order to heal and was given a 3 week time-out from life.
I awoke to find some things had changed and some things sadly had not. I was suddenly a non-smoker and had lost 30 pounds, but I still had cancer and we hadn’t even begun to deal with that.
I was scared – no, I was terrified. Every minute it seemed as if there were a choir in my head screaming “you’re going to die”. My only relief was to drown them out by playing Aerosmith at full volume through the headphones. I was faced with and lived through months of limbo, my moods dictated by my endless blood test numbers, my weeks filled with doctor visits and all day blood transfusions and most of all the fear that none of this would be enough to save me. Emotionally I felt completely disconnected from the universe as if all of creation had turned its back on me and I had been banished. I have never felt so alone.
I spent a lot of time thinking of all the things I might never do
- would I live to see the age of 50?
- would I grow old with my husband Cliffe?
- would I die and leave my parents heartbroken and defeated?
- I certainly would never make it back to Italy where we had just purchased a home – our dream come true.
The list went on and on.
Somehow, one day at a time, sometimes 5 minutes at a time I kept going. I guess I didn’t know what else to do. My husband, parents and friends propped me up and showered me with love and sometimes I only kept going for them. They believed that I would recover so I needed to believe it too.
We tried to do normal things. Dinner out, vacation, celebrated birthdays kept living and the days passed one by one, very slowly. I bought anew camera and making pictures was another way I could keep my mind from racing to that bad place of certain death. Having much time on my hands I also thought about what I would do if I did indeed survive. I knew that given a second chance I would never take life for granted nor would I waste a single second being stuck and afraid.
I would really LIVE if only I could live.
By the late Fall – 9 months later – we found out that the MDS had become leukemia, my bone marrow was not going to repair itself and that my only chance was a risky bone marrow transplant. This procedure involved severe chemotherapy that would kill my bone marrow leaving me without an immune system and if my donor’s cells didn’t take I was screwed. I’d be locked up in that isolation room until I died of an infection.
This all seemed so huge and scary. It was weird science to me, like a dream or a movie of someone else, but it was a plan. It was taking action, fighting what I knew had been coming all summer. It was time to do battle and although terrified, I knew it was my only chance and that I had to trust my doctor and more than that, I had to believe in myself. Believe that I could heal, believe that I would recover and that there was a reason for me to stick around. There was a place in the universe for me.
I wasn’t at all sure of what that place was or who I would be, but I began to feel more comfortable with the uncertainty. Not that I was actually embracing it, but discomfort was beginning to be less awful now that we were in the fight. I knew that only by risking it all, by crossing the point of no return could I recover and begin again.
This big, scary plan was certainly better than the limbo in which I had existed for nearly a year.So between January and late June, I
- had a bone marrow transplant
- physically went to hell and slowly came back
- spent 5 weeks in the isolation unit of the hospital and 5 weeks in a cool apartment next door to the hospital
- lost all my hair
- rocked the bald, masked, gloved with big earrings look
- came home and continued the slow recovery from near death
- bought a new car – can you believe they gave me a 5 year loan???
I also began planning to do the things on that list I made the first few days after my diagnosis. I felt so lucky to be alive and traveling again. We went to our first NASCAR race and I, having been a closet car racing fan for years loved every minute of that show. We made it back to Italy. We reconnected with friends and life began to take shape again piece by piece.
I knew that I didn’t want my old life back, that fearful, stuck existence. I wanted adventure, growth, expression and a real connection to the universe and others. Like Maya Angelou said “The need for change bulldozed a road down the center of my mind”. I started therapy and began a journey to discover the reasons I was so afraid of life. Again, it was a big, scary undertaking but hey, I’d just survived a burst spleen, a coma, 9 months of mental, physical and emotional torture and a bone marrow transplant so this surely wouldn’t stop me. I was using what I’d learned about my strength and grit to get me through the next challenge. Besides, I’d already come so far and invested so much I couldn’t quit. Anytime I felt like it was too much I’d think this is nowhere near as bad as my worst day and I got through it.
But physical and emotional recovery were only the start. I wanted to really LIVE. In capital letters. I wanted to pursue my lifelong hobby of photography in a much more serious way. My new camera was my tool and I threw myself into making photos with wild abandon. Photos that no one ever saw because I cared so much about my art that I couldn’t bear the thought of rejection. I made thousands of images, poured over them and then put them safely away. I told myself that they were just for me anyway, but down deep I knew that I wanted to launch them into the world and share them with others. Once again fear and discomfort were holding me back.
Then I met Deb Walsh who told me to hang out with my own tribe (artists) and that my life was a story and I should be the hero. I had never thought of it that way, but I realized that it WAS my story and that I was writing it and that I pretty much controlled what was next and how I would live it. The uncertainty of what would happen was fine because whatever it was, I’d always have me. I was scared, but that’s because this was another big plan, but I knew that I was getting good at big plans. My discomfort meant that I was learning and growing. My fear told me that my plan was plenty big. And besides, nothing would ever feel as bad as my worst day.
So I made and published a website of my photographs, entered some in local art shows and went back to school at RISD taking photography, digital media and printing courses. There I met other photographers and began hanging out with my tribe, eventually joining them on a photographic delegation to Cuba this past January.
At the beginning of 2014 I set some intentions for the year aimed at pushing myself and my boundaries. I would say yes, not no, to things. I would take risks, investigate uncharted territory and seek what’s next. That’s why I’m here tonight, public speaking being one of the things I always said no to. But what I want to share with you is the thing that took so much for me to learn. You don’t need a diagnosis to spark the changes you desire.
You don’t have to nearly lose everything to gain your true life.
All you need to do is:
- Believe in yourself
- Keep going no matter what
- embrace uncertainty – that’s where the growth is
- know that you will be uncomfortable and that’s ok
- Welcome fear – then you’ll know your plans are big enough
- get connected to your tribe and the universe and
- remember as Glinda said, “you’ve had the power all along, my dear you just needed to learn it for yourself.
To learn more about Betsy and her work at Betsy Fenik Photography, visit http://www.betsyfenikphotography.com/